Towards an EHR architecture for mobile citizens

Electronic Health Records are typically created and stored in different places, by different healthcare providers, using different formats and technology. This poses an obstacle to patient mobility and contributes to scatter personal health related information. Patients constantly move between healthcare providers, searching for a better service, lower prices or specialists. It is important that healthcare professionals, regardless of technology and location, have access to the complete patient health record. The access to this personal health record can be granted through a network (web-based, for example) or can be carried by the patient, in a usb drive, for example. Either approach has to enforce the patient consent to access his information, cope with different types of EHR systems and formats. This paper is an ongoing research, part of a PhD on Electronic Health Records for Mobile Citizens.Universidade de Aveiro - DETI / IEET

A feasibility study for the provision of electronic healthcare tools and services in areas of Greece, Cyprus and Italy

Background: Through this paper, we present the initial steps for the creation of an integrated platform for the provision of a series of eHealth tools and services to both citizens and travelers in isolated areas of thesoutheast Mediterranean, and on board ships travelling across it. The platform was created through an INTERREG IIIB ARCHIMED project called INTERMED. Methods: The support of primary healthcare, home care and the continuous education of physicians are the three major issues that the proposed platform is trying to facilitate. The proposed system is based on state-of-the-art telemedicine systems and is able to provide the following healthcare services: i) Telecollaboration and teleconsultation services between remotely located healthcare providers, ii) telemedicine services in emergencies, iii) home telecare services for "at risk" citizens such as the elderly and patients with chronic diseases, and iv) eLearning services for the continuous training through seminars of both healthcare personnel (physicians, nurses etc) and persons supporting "at risk" citizens. These systems support data transmission over simple phone lines, internet connections, integrated services digital network/digital subscriber lines, satellite links, mobile networks (GPRS/3G), and wireless local area networks. The data corresponds, among others, to voice, vital biosignals, still medical images, video, and data used by eLearning applications. The proposed platform comprises several systems, each supporting different services. These were integrated using a common data storage and exchange scheme in order to achieve system interoperability in terms of software, language and national characteristics. Results: The platform has been installed and evaluated in different rural and urban sites in Greece, Cyprus and Italy. The evaluation was mainly related to technical issues and user satisfaction. The selected sites are, among others, rural health centers, ambulances, homes of "at-risk" citizens, and a ferry. Conclusions: The results proved the functionality and utilization of the platform in various rural places in Greece, Cyprus and Italy. However, further actions are needed to enable the local healthcare systems and the different population groups to be familiarized with, and use in their everyday lives, mature technological solutions for the provision of healthcare services

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Dwarna : a blockchain solution for dynamic consent in biobanking

Dynamic consent aims to empower research partners and facilitate active participation in the research process. Used within the context of biobanking, it gives individuals access to information and control to determine how and where their biospecimens and data should be used. We present Dwarna—a web portal for ‘dynamic consent’ that acts as a hub connecting the different stakeholders of the Malta Biobank: biobank managers, researchers, research partners, and the general public. The portal stores research partners’ consent in a blockchain to create an immutable audit trail of research partners’ consent changes. Dwarna’s structure also presents a solution to the European Union’s General Data Protection Regulation’s right to erasure—a right that is seemingly incompatible with the blockchain model. Dwarna’s transparent structure increases trustworthiness in the biobanking process by giving research partners more control over which research studies they participate in, by facilitating the withdrawal of consent and by making it possible to request that the biospecimen and associated data are destroyed.peer-reviewe

Holistic System Design for Distributed National eHealth Services

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Architectural Constraints on the Bootstrapping of a Personal Health Record

During the last decade we have seen a proliferation of electronic personal health record systems (PHRs) aiming to change the way people manage and receive healthcare. However, many of these initiatives have failed to take-off. We inquire into such unsatisfactory outcomes by drawing upon the perspective proposed in the information infrastructure (II) literature. This literature views the value of PHRs as dependent on the number of actors using them. This poses a challenge for designers (referred to as ‘bootstrapping’): how to persuade users to adopt a PHR when the user base is still small. To address the bootstrap- ping challenge, II literature suggests starting with a simple solution that creates immediate user value and enables users to enroll gradually. This paper seeks to explore how PHR architecture can hinder PHR bootstrapping through a longitudinal case study on the implementation of an integrated PHR. Our case analysis identifies four architectural constraints: poor data quality; coordination across heterogeneity; privacy and control; and re-configurability. This paper concludes by discussing the implications of the findings for the literature on personal and electronic health records and on the design of information infrastructures